Update on Mikah: Neurologist, 1/16

What a day!!!!!

This morning was Mikah's 3 month followup appointment with his awesome neurologist, whom we love, and we thought that he was going to be releasing us from his care. Since the genetic test came back and revealed that there was no mutation of the gene that causes GA1, we figured we were in the clear. And, once again, I was reminded that I should never get too comfy in where we are right now.

I said that we love his neurologist, and I mean it. He is an amazing doctor, and you can tell that he cares a lot about his patients. He is thorough, and is more than happy and willing to answer all 5,000 questions that we always end up asking.

So, anyways, my sweet aunt drove Kaisyn, Mikah, and me out to Charlotte, to Presbyterian Pediatric Neurology. When we got there, they weighed my sweet boy...and guess how big this little chunker is getting?! He weighs 22 lbs 9.5 oz!! Granted, he was fully clothed, jacket and all, but still he has surpassed 20 pounds!! He is SUCH a big boy!

They measured his head again, and you guessed it...it's grown yet ANOTHER 3 cm in the past 3 months. Now remember, he was already off the chart in head size, so now he is literally over an inch above the 100% line. That was the doctors first red flag.

Then, we talked about Mikah's development. Yes, he was a preemie. And he is working on catching up, but he isn't quite there yet.

I don't know if I've mentioned it in here before, so I'll explain about Mikah's leg. Ever since Mikah started trying to crawl, he has favored his left leg over his right...a lot. At first, up until about 2 weeks ago, he didn't use his right leg at all. He just dragged it behind him, and when he would try to pull up, he would fall over. Now, he has learned that he can use that knee just to balance when he crawls. So, he will push with his left leg, drag his right knee to catch up, and balance on that knee for a second so he can push off with his left leg again.

He CAN pull up now, but if you watch him, he is using his left leg to do so. The right helps him balance once he is up, but he is still unsturdy. If you barely hold up his right foot so that he is only on his left leg, he will continue to stand. If you barely lift his left foot so that only his right leg is on the ground, he will let his leg go limp and fall down. This was red flag #2.

Last, we talked about Mikah's urine. Yes, I know...lovely subject, but it's worth explaining. Mikah has enzymes and toxins in his urine that just shouldn't be there. This is why they tested him positive for GA1 two different times before running the full genetic screen. Basically, Mikah has every sign of GA1 except the mutation of the gene, which is odd. And Dr. Jacobson wasn't exactly sure what that meant, being honest with us. He said that the high risk of SIDS shouldn't be a worry anymore, but that there is something metabolically wrong, causing these enzymes and toxins. This is the last red flag.

He looked Mikah over, and listened to both his chest, and his soft spot on his head. And he explained that he wanted to order an MRI, to get a closer picture of his brain, and that he also wants to get pictures of Mikah's spine.

He said that it's a possibility that Mikah could have a tethered spinal cord. He explained that basically he may have a small hole in his spinal cord, which causes fluid not to drain properly (causing the large and growing head), and causing some nerve damage to his lower extremeties (explaining why Mikah doesn't like to use his right leg).

Of course in my mind, I'm sitting there thinking...seriously? This happy little boy, who is always smiling for mommy, and as sweet as can be...you want to do MORE tests on him, because now it could be something completely different that is wrong. But, I remember to breathe and just keep listening.

Back up a minute. Now remember, back in April (I think?), both Mikah and Khoen were referred to OrthoCarolina, because the pediatrician heard a 'click' in Mikah's hip, which they said is common in preemies, especially born breech. The doctor there heard nothing in Khoen's hips and said they seemed fine, but DID hear a click in Mikah's hip, and had us set up an appointment for an ultrasound of his hip.

When we took Mikah for his ultrasound, they went ahead and did one on Khoen, too. Again, Khoen's were completely normal, but they saw a small place where the tissue in Mikah's were either underdeveloped or a little out of place. Once again, we were told this was normal for preemies, especially born breech (and Mikah was butt-first breech!), and that it should continue to develop as he grows and not cause any issues. And that day, they dismissed us from their care, since it was no longer necessary.

Ok, back to today...now IF and ONLY IF Mikah does have a tethered spinal cord, they will run some tests to check for Spina Bifida. The doctor does NOT think at this time that this is the issue, and we will only talk about it if the MRI shows signs.

Spina Bifida can cause hydrocephalus, and can cause weakness or paralysis in lower extremeties. It also causes problems with the bowels and bladder, but Mikah has no signs of that.

So as of now, that term isn't going to exist to me. We will cross that bridge if and when we have to!

The office is supposed to be calling me within the next few days to schedule Mikah's MRI. I have to admit, I get a little nervous thinking about it, only because he has to be sedated. But, he will NOT be intubated...there will be a team of nurses, and one will be monitoring his heart rate closely, while another monitors his breathing carefully. So, I'm confident. At the end of the day, it's in God's hands.

I know there are kids that, unfortunately, have to be sedated often, so that's not all that I'm worried about. I'm honestly worried about my mental health the moment they take Mikah back for his procedure.

The last time I was going through something like this, it was when Khoen was sick, and had to be in the hospital. And I remember them taking him away for his IV, and not bringing him back to me for an HOUR. His veins weren't cooperating, but how was I supposed to know that until the nurse came to update me?! In my mind, an IV should have been quick, and he should have been back, and I was scared. I just wanted him back in my arms. It almost seems ironic now...

But, when they take Mikah away to do his MRI, I know I am going to just have that fear of him not coming back. And yes, I know, it is irrational. But, after losing Khoen, the fear is very real to me, and it scares me more than anything.

I will get through this. I know Mikah will, I have no worries there. He is so strong, and he is brave. He will be just fine, and no matter what the outcome, I will get him through whatever life brings our way.

I have my faith, and that is what gets me through. I know that God has a plan, and, whatever it may be, we will follow. I just want Mikah here, with me, no matter what may or may not be wrong with him. I love that little boy more than words can ever describe.

So for now, we are just waiting for a phone call, and an appointment for an MRI to tell us where to go from here. Please keep praying for little man, and for all of us. Through it all, God is good, and he will lead the way!

One more month!!!!

Today is January 7. Know what that means?

It means that in one short month, it will be a year from the day that I gave birth to my sweet twin boys.

In just one month, I will celebrate Mikah's earthly first birthday, and celebrate for Khoen, who will spend his first birthday in Heaven.

I feel so behind. I still have yet to plan. I started to make a list of what I was going to get as far as party supplies for Mikah the other day, but I honestly didn't get very far. So, I've pretty much decided that instead of stressing myself out over trying to plan a big party when, to be completely honest, I don't think I will be much in a party mood that day, I'm just going to have a little get together for family at my moms.

I am going to have a little ceremony for Khoen the night before (more than likely, but it may end up being the day of...not sure yet), that way I can try to get my tears under control and smile for sweet little Mikah at his celebration. Because it isn't going to be easy.

I don't want Mikah to relate his birthday to me being sad. I am always happy on the girls birthdays, and Mikah deserves the same. So for him, I will do it. I will not let him down, nor will I let Khoen down. I know Khoen wouldn't want me to be sad. He would want me to make the day extra special for Mikah. And I will, somehow.

It's creeping up on me faster than I'm comfortable with though...

I'm still trying to come up with what I want to do in honor of Khoen. I want to come up with an ongoing project, where I can help others and make Khoen's name known. As of now, I'm stil drawing a blank. But, I do think I want to do something to support siblings who are going through loss, or even siblings who have a sick brother or sister. I've seen first hand with Makenna how hard it is on them. And they need to know that they are special too. I'm not sure, but I won't stop thinking until I come up with it!

A little update on the kiddos:

Makenna is doing pretty good. She is still having night terrors like crazy, and some nights are worse than others. Last night, she ended up in my bed around 2 in the morning, and told me she didn't even want to go back to sleep because she was tired of waking up scared, and not knowing what scared her. That's not fun to hear. I feel bad because I don't know how to make them stop, but I am doing all I can. I'll help her through this. She's my little best friend.

Kaisyn is growing up so fast. She is talking a TON now, and even making little sentences! That's a big deal for our babygirl, because at her 18 month checkup speech therapy was mentioned. They said she should be saying between 20-40 words by then, and she was really only saying 'mama' and 'dada' and 'sissis'. But boy has she taken off!! Now she will repeat pretty much everything she hears, and can say all of her colors. I am a proud momma!! She is still stubborn, and it has to be "Kaisyn's way". That's a daily battle, but she's so precious. She is a blessing.

And Mikah, or "J" as we usually end up calling him around here. (Which is short for his middle name, James, after my grandad) That little boy is into EVERYTHING! We have had to completely re-babyproof our entire house, and he still finds a way into anything he isn't supposed to get in to! The girls were always so laid back and no trouble when it came to that...Mikah, he is a handful! He can walk along furniture, and can climb the stairs, which I HATE!! When we buy a house, it will NOT have stairs in it!!! Too much to worry about with little ones! But, Mikah is such a gift, and I wouldn't change him a bit.

I often find myself daydreaming about what it would be like if Khoen were here beside Mikah, getting into everything. I know it would be so busy and crazy, but I would absolutely love it.

I have the 4 best kids in the world. And I can't thank God enough.

Love you, Khoen, and miss you sweet baby. <3